Can Facebook solve the organ donor crisis?

“Starting today, you can add that you’re an organ donor to your timeline, and share your story about when, where or why you decided to become a donor… (Facebook) can be a big part of helping solve the crisis out there.”—Facebook CEO Mark Zuckerberg, May 1, 2012

Facebook is officially in the business of organ donation. Since the social media giant’s CEO Mark Zuckerberg announced a new feature that will allow users in the U.K., U.S. and Australia to list their organ donor status, there have been reports of real-life donor surges. In the U.S., on the day of the announcement, more than 100,000 people declared on Facebook that they had decided to be organ donors, and some 22,000 followed a link on the site that connects to online donor registries. The response, said the chief executive of Donate Life America, “dwarfs any past organ donation initiative.”

Though the feature is not available to Canadian Facebookers right now, the news reportedly caused a spike here, too. Of course, we don’t yet know whether Facebook will have a lasting impact on donation rates, or whether announcing one’s donor status will lead to an actual increase in donations over time. Still, the phenomenon raised one perennial question: How do you actually get people to donate?

Opt-in versus opt-out regimes

Canada has relied on altruism for organ donations (i.e. you need to opt-in if you wish to donate), but other places nudge people into donating by asking them to actively “opt out” if they don’t want to. The practice is known as “presumed consent.” Some say this approach is the answer to organ shortages, since having donation as the default option would, logically, yield more donations than waiting for people to opt in.

Indeed, a 2006 observational study by researchers at Harvard demonstrated there may be a correlation between “opt-out” legislation and higher donation rates. This has since informed much of the magical thinking about presumed consent. But not so fast. As Muireann Quigley, a lecturer in bioethics at the University of Manchester who studies this issue, pointed out, “The study did not look at all the things that might confound the results.” For example, she continued, “It might be that organ donation rates are higher in some countries even if they didn’t have the opt-out system, or there may be other cultural and health-system reasons that impact rates.” Even the authors of the oft-cited study noted that their correlation “is not completely unequivocal.”

University of Stirling philosophy professor Ben Saunders suggested looking at what happened in countries that have moved from opt-in to opt-out, or vice versa. “But even here matters are difficult since the switch is often accompanied by other factors that may influence donation rates, such as increased public focus on organ donation.” Other factors, identified in a systematic review, that may have an impact include things like whether families can veto a donors’ wishes. If family consent is needed, a person’s pledge to donate may never actually be realized.

Spain, for instance, is often deemed the gold standard for organ donation with its enviable donor rates and opt-out policy. But even it’s not quite as clear-cut a case as one would think. “Spain introduced its op-out law in 1979,” said Dr. Quigley, “and it wasn’t until ten years later that their rates started to increase.” By then, they had reorganized the health system and infrastructure for organ donations.

Bringing in an opt-out system can even have the opposite effect on donor rates, explained Linda Wright, the director of bioethics and palliative care at the University Health Network in Toronto. “When the opt-out system was introduced in Brazil, the (donor) rates actually went down.” If people don’t like the idea of an opt-out regime, there could be a backlash that negatively impacts donor rates.

One thing we do know: social-cultural considerations often guide organ donor decisions. Take Israel, which is experimenting with an entirely new system. There, citizens who sign-up to be donors get priority points should they ever need an organ. The change was inspired by a cardiothoracic surgeon who was befuddled when two ultra-Orthodox, Haredi Jewish patients told him they’d never donate organs because of religious reasons—despite the fact that they were awaiting heart transplants themselves. So now, Israel is the first country where non-medical criteria are being brought into the careful calculation of transplant priority. The hope is that it will alter the social norms that some say put Israel at the bottom of the list of Western countries when it comes to organ donor rates.

What does this tell us about the Facebook campaign?

Some cite “the science of social pressure” as the reason why Facebook’s foray into organ donation might work: declaring your donor status on the social network could make donation appear more mainstream and encourage others in your network to sign-up, too. Those who study donor policies told Science-ish they believe a change in Facebookland could have an effect off-line. “Putting (your status) on Facebook lets other people know you want to be an organ donor,” said the UHN’s Wright. “It’s getting the message out that this is something other people do.” She cited the recent success of the social media campaign around Helene Campbell, the recipient of a double-lung transplant. Interestingly, she also suggested that a declaration on Facebook may help guide family members in making the difficult decision about what to do when a loved passes.

Dr. Saunders was similarly hopeful. “People could lie about their donor status on Facebook but at least it encourages people to think about organ donation in a good light and maybe actually to go through with it.”

Science-ish is a joint project of Maclean’s, the Medical Post and the McMaster Health Forum. Julia Belluz is the associate editor at The Medical Post. Got a tip? Seen something that’s Science-ish? Message her at julia.belluz@medicalpost.rogers.com or on Twitter @juliaoftoronto

Opt-in is a world wide crisis
for organ donation. Countries with an Opt-out policy have a more than 90%
registration of organ donors. While countries with an Opt-in policy have a less
than 30% registration. Denmark
sent post cards to every household asking to register as an organ donor. That
campaign only increased registration by 2-3%. Countries and States have to
adopt the Opt-out policy. Buy the way, I am a two time living organ donor.

Is there a place on Facebook where you can say that you are definitely NOT an organ donor? I am not an organ donor because no actual donor has personally told the world — after the fact — what he went through when the time came and he was lying there drugged, trapped and unable to communicate changing his mind. All that the rest of us know is that donors aren’t dead when their organs are removed… They only truly die when their heart is taken. I think it must be utterly terrifying and if on life support, they must feel everything! Life support equals life. Sensations, personal sadness and fear. Where is the whole story?

Data mining is one thing but now they are creating a list of potenial body parts which will likely be brokered through Israel. Be aware folks, this is not a good thing. It is for those involved a possible billion dollar money maker. Notice how they are writing this up as a very good thing.

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